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Beckwith Wiedemann Syndrome

National Organization for Rare Disorders, Inc.

ImportantIt is possible that the main title of the report Beckwith Wiedemann Syndrome is not the name you expected.

Disorder Subdivisions

None

General Discussion

Beckwith-Wiedemann syndrome (BWS) is a rare genetic overgrowth disorder. It is characterized by a wide spectrum of symptoms and physical findings that vary in range and severity from case to case. However, in many individuals, associated features include above-average birth and weight and increased growth after birth (postnatally), an usually large tongue (macroglossia), enlargement of certain internal organs (visceromegaly), and protrusion of a portion of the intestines and abdominal organs through a tear in the wall of the stomach or bellybutton (abdominal wall defects). BWS may also be associated with low blood sugar levels within the first few days or the first month of life (neonatal hypoglycemia), advanced bone age, particularly up to age four; distinctive grooves in the ear lobes and other facial abnormalities, abnormal enlargement of one side or structure of the body (hemihyperplasia) may occur, resulting in unequal (asymmetric) growth, and an increased risk of developing certain childhood cancers.

In approximately 85 percent of cases, BWS results from genetic changes that appear to occur randomly (sporadically). Approximately 10-15 percent of cases of this syndrome run in families and show autosomal dominant inheritance. Researchers have determined that BWS results from various abnormalities affecting the proper expression or structure of certain genes within a specific region of chromosome 11.

Supporting Organizations

American Childhood Cancer Organization

10920 Connecticut Ave

Suite A

Kensington, MD 20895

Tel: (301)962-3520

Fax: (301)962-3521

Tel: (800)366-2223

Email: staff@acco.org

Website: http://www.acco.org

Beckwith-Wiedemann Children's Foundation International

9031 Cascadia Ave

Everett, WA 98208

Tel: (425)338-4610

Fax: (425)357-8575

Email: BWCFKathy@comcast.net

Website: http://beckwithwiedemann.org/

Beckwith-Wiedemann Family Forum

105 Yehudah St. Apt 2

Modi'in, 71700

Israel

Tel: 1197289714544

Email: julie@netor.co.il

Website: http://www.beckwith-wiedemann.info/

Childhood Cancer Canada Foundation

21 St. Clair Avenue East, Suite 801

Toronto

Ontario, M4T 1L9

Canada

Tel: 4164896440

Fax: 4164899812

Tel: 8003631062

Email: info@childhoodcancer.ca

Website: http://www.childhoodcancer.ca

CureSearch for Children's Cancer

4600 East West Highway, Suite 600

Bethesda, MD 20814-3457

USA

Tel: (626)447-1674

Fax: (626)447-6359

Tel: (800)458-6223

Email: info@curesearch.org

Website: http://www.curesearch.org

Genetic and Rare Diseases (GARD) Information Center

PO Box 8126

Gaithersburg, MD 20898-8126

Tel: (301)251-4925

Fax: (301)251-4911

Tel: (888)205-2311

Website: http://rarediseases.info.nih.gov/GARD/

March of Dimes

1275 Mamaroneck Avenue

White Plains, NY 10605

Tel: (914)997-4488

Fax: (914)997-4763

Email: AskUs@marchofdimes.org or preguntas@nacersano.org

Website: http://www.marchofdimes.org and nacersano.org

NIH/National Institute of Child Health and Human Development

31 Center Dr

Building 31, Room 2A32

Bethesda, MD 20892

Fax: (866)760-5947

Tel: (800)370-2943

Email: NICHDInformationResourceCenter@mail.nih.gov

Website: http://www.nichd.nih.gov/

National Cancer Institute

6116 Executive Blvd Suite 300

Bethesda, MD 20892-8322

USA

Tel: (301)435-3848

Tel: (800)422-6237

Email: cancergovstaff@mail.nih.gov

Website: http://www.cancer.gov

National Cancer Institute Physician Data Query

Office of Communications and Education

Public Inquiries Office

Bethesda, MD 20892-8322

Tel: (800)422-6237

Email: cancergovstaff@mail.nih.gov

Website: http://www.cancer.gov/cancertopics/pdq/cancerdatabase

Neuroblastoma Children's Cancer Society

P.O. Box 957672

Hoffman Estates, IL 60195

USA

Tel: (847)605-1245

Fax: (847)605-0705

Tel: (800)532-5162

Email: Info@neurblastomacancer.org

Website: http://www.neuroblastomacancer.org

OncoLink: The University of Pennsylvania Cancer Center Resource

3400 Spruce Street

2 Donner

Philadelphia, PA 19104-4283

USA

Tel: (215)349-8895

Fax: (215)349-5445

Email: hampshire@uphs.upenn.edu

Website: http://www.oncolink.upenn.edu

The Arc

1825 K Street NW, Suite 1200

Washington, DC 20006

Tel: (202)534-3700

Fax: (202)534-3731

Tel: (800)433-5255

Email: info@thearc.org

Website: http://www.thearc.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report.

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

Last Updated: 2/22/2016Copyright 2007 National Organization for Rare Disorders, Inc.

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